And I think of you…

I’m off to an excellent start with doing things that make me feel good. After months of things getting in the way I managed to get a last minute tattoo appointment.

The whole tattoo process makes me feel kinda wonderful. I love the sensation; it’s a nice pain, if there is such a thing. I adore the results even more. My tattoos are mostly words that stir me. The latest addition follows that theme.

e e Cummings tattoo

It’s a little section of e e Cummings’ In The Rain. I’ve wanted these words on my skin for a long time. They’re beautiful and touch many of my sensitive spots. Cummings has always made my heart thump and it’s amazing to carry his genius with me.

I can’t praise True Colour Tattoo enough. It’s such a warm, friendly studio with incredibly talented artists. Chrisse was super lovely and her work is fantastic. Bring tattooed by a woman always improves my experience.

Tattoo in progress at true colour

This is my first colour tattoo. I swithered about it, but green was definitely the right way to go. The tattoo is gorgeous. It’s aided a tiny bit of healing. Oh & it’s helping me tick off one of my 40 before 40. Not bad for a spontaneous Wednesday decision.

New tattoo ly h Kerr

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There’s some light, think you need it…

I knew Mother’s Day was going to be tough this year. Since I always over think every little thing, I did spend some time dwelling on that in the run up to Sunday. Occasionally my inability to switch my thoughts off serves me well, this was just such an instance.

It didn’t change how sad I felt, but I did stumble upon a new strategy. Simply put, I’m going to try my damnedest to have more fun. My life is not really all that easy (who’s is?). There’s a lot of pain, exhaustion, stress & large scale disappointment. None of which I can control. I’ve had to make some huge adjustments in my life expectations this year and that is, well, a process. I can’t change the fundamentals of my situation. I can let go a little bit. I can allow myself to please just me more of the time and I am going to.

Glasgow new beginning

I’m going to date. For fun, god help me. I’m not seeking a soul mate or partner. The aim is merely to find some amusing people I can do enjoyable things with. Hopefully without anyone making too many demands. I’m reviewing all my filed away lists of things I’ve always wanted to do and bloody well jumping on anything that is actually doable. Efforts will be made to ditch the guilt. I’m going to say more no’s to the things I do for the benefits of others that cut me in two. Plus a lot more yes’s to anything & everything that makes me feel good. To hell with the rules or convention. Life is going to fuck me regardless, I might as well squeeze as out as much glee as I can along the way.

With that in mind I began my week with a jaunt to Edinburgh to see my favourite man. Friends who will let you say anything and always leave you feeling better than they found you are magnificent. So, I soaked up too many glasses wine & just enough of his loveliness to give me a major boost. I followed up with the an almost perfect day at the farm. Watching my baby nephew discover the world is a truly beautiful experience. The tiny goats were also worth the trip.

ly h Kerr, Castle st, empty glassesBuchanan st, Pygmy goat, baba & a chicken

I feel like I’ve been hit by a truck now. It’s going to take some recovery days to get back to ‘normal’. My ratio of doing to resting isn’t what I’d hope for. I’m giving myself permission to use some of those good days for pure frivolity.

ly h Kerr

Don’t speak…

I’ve talked about the misguided things that people say in the wake of a miscarriage. Although these things can hurt, I understand that no harm is intended. I’ve been hesitant to tackle the other side, the people who say things they know will cause pain. Try as I might I cannot understand what they gain from this. Bear with me, I’m going to do a little blog therapy.

I can’t believe this has to be said, but here goes. A person’s stance on abortion is not relevant if the have a miscarriage. After my most recent loss it was suggested that my pro choice beliefs made my devastation over the miscarriage incongruous. Actually I think they were insinuating that it was hypocritical of me to grieve the loss of a foetus when I support the right of someone else to terminate one. Let me be clear, I support each individual’s right to choose. My experiences of pregnancy and miscarriage have only strengthened my pro choice convictions. Carrying a pregnancy and giving birth is an undertaking of such enormous magnitude that it should only ever be done willingly. My desire to have a child is not in conflict with my refusal to deny others bodily autonomy. I don’t want or need an abortion, but I will fight for those who do. Using that against me at my most vulnerable moment is cruel. Choice is the operative word. I had no choice in losing my wanted pregnancies. My dead babies are not a debating point. Attempting to litigate how upset a person is permitted to be is disgusting.

Choice clouds

Equally repugnant and heartbreaking was the proffering of surprise that I would be hit so hard by a fourth miscarriage. The reasoning being that I should have expected it may happen (I did of course) and that I should have become hardened to it by now. I can’t comprehend the lack of empathy it would take to think such a thing let alone say it loud. I don’t understand how one comes to the conclusion that reliving the worst time of your life over and over would make it easier. I can’t understand how anyone would imagine that having a worst fear realised is any less awful because you knew it could happen. Forcing someone to defend their distress is cruel in a way that must be deliberate.

I also wanted to touch on a group of platitudes that are offered frequently. Variations of ‘everything happens for a reason’, ‘god moves in mysterious ways’ or ‘it’s a blessing in disguise’ are never ok. I have been repeatedly assured that good intentions lie behind these phrases and I’m calling bullshit on that. They’re just lazy and ignorant remarks. Even a moments thought would uncover how inappropriate it is force your religiosity on someone. If you somehow take comfort in believing that ‘god’ purposefully snuffs out specific unborn that’s bizarre, but your business. To impose those ideas on fragile people in the midst of trauma is wilful ignorance. It is choosing to prioritise your own comfort above that of someone who is suffering.

Blurred light

I’m incredulous that I have to say any of this. It hurts to be forced into these unnecessary conversations. These aren’t blunders, they are examples of selfish agenda pushing. There is no kind reason to pursue these topics. It’s callous & inexcusable. Don’t do it.

I give up…

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

Hit the spot…

February has been a fairly insular month. It’s very cold outside & I’m not much in the mood for socialising. I’ve hit the Netflix & actually chill a little harder than usual. It’s been the month for distractions & these have been the most effective.

I’ll just dive right in with the Netflix shows that have definitely been diverting if not entirely relaxing. Abducted in Plain Sight is insane. It’s documentary covering the abduction of a girl by a family friend. The behaviour of almost every adult in the entire tale is beyond explanation. If the story was fiction it would be dismissed as ridiculous. Also horrific, but in a completely different way is The Bleeding Edge. Another documentary, this one about medical devices & implants that highlights a terrifyingly lax regulation process. Watching this doc probably did not help my insomnia, but it may save me some future medical catastrophe. Last of my Netflix trilogy is also billed is scary. Since I’d never trust a man I’d only known 6 weeks never mind marry one, this one isn’t keeping me up nights. Dirty John is based on the true story of a lying, cheating nutcase. Whilst it’s doing nothing to raise my opinion of the menfolk it is worth a watch. I have been watching one series that does make me feel warm towards humanity, Catastrophe. Everything about it is exceptional; hilarious, real, romantic, tawdry & I liked. The final episode had me in bits, in a good way.

Netflix viewing

An insomniacs best friend is a good book and I’ve been rattling through them in the last few weeks. I opened the month with The Tattooist of Auschwitz which manages to do the almost impossible by making a story about a death camp hopeful. Having said that it’s not very well written & really doesn’t live up to the hype. Giving a book about the holocaust a tepid review feels harsh, but there are better books on this topic. Oyinkan Braithwaite’s take on the serial killer genre was a better choice. My Sister, the Serial Killer is creepy and yet almost playful. You know exactly where the story is headed, but you still want to get there. I’m currently digging back into the Patrick Melrose novels. I re read the first two in the series last year and then got sidetracked. Some Hope is probably my favourite of the five. If you haven’t read these St Aubyn classics, you should.

Patrick Melrose novels & the tattooist if auschwitz

My cute little record player was an excellent purchase. It offers distraction on two fronts, great sounding bath soundtracks & an excuse to go rooting in second hand shops for cool records. The latest of which is The Jesus and Mary Chain. Psycho Candy gets me with it’s relaxed trippiness. It is extra beloved for being on the Lost in Translation soundtrack & just thinking about that last kiss in the street makes me smile.

Books & records

Bronan really likes it too. Every time I put a record on he sits right beside it & purrs like mad.

Cat listening to record playing

Back on the digital side I have had one song in particular on repeat. No Pressure by Mahalia just speaks to me. It’s one of those songs that I just adore the cadence of. I was alerted to it’s greatness via Meghan Tonjes’ insta stories. Meghan herself has also been featuring on my Spotify most played list. Her collaboration with Daren on Count Me Out is a sentiment I can get behind.

Mahalia, no pressure

When I have ventured out it has been to see my glorious little people (& their creators) all of whom breathe colour into my life. My littlest monkey had his first birthday this month. My big nephew is going through an adorable dinosaur phase. Madison’s curls just keep getting cuter & my not so little goddess is texting now. She just loves to send her old auntie freaky gifs.

Not sleeping also gives me endless hours to paint my nails. I hate to have bare nails. These have been my February favs.

ly h Kerr Nail Art

Mixed media & preening aside it’s been an equal split between baths and sunsets. Both bring me comfort and earn a 5 star rating.

Sunsets and thigh tattoo in the bath

Make it easy on yourself…

2019 has barely gotten going & it’s been rough already. In a matter of weeks I have lost my baby & my boyfriend, which is less than an auspicious beginning. If I sound flippant, I’m not, I’m just trying very hard to put one foot in front of the other.

The demise of my pregnancy is devastating. My relationship’s end is sad, but the right decision and that’s about all I have to say on the topic. I find myself approaching the year (and my life) alone again. Being single hasn’t ever worried me all that much. I’m definitely not scared to be that kind of alone. Childlessness on the other hand, terrifies me. What do you when you’re facing your biggest fear? I haven’t a fucking a clue.

#projectpostit

For the time being I have taken the clichéd approach of one day at a time. I’m trying not to spend every day at home in my jammies (there is however a lot of crying on the sofa). Functioning is a struggle for a multitude of reasons. Primarily, I am exhausted. I’m always tired. Add even less sleep, the effort it takes to contain my anger at life itself, the fact that I will not stop bleeding, so despite the blood transfusion my haemoglobin level continues to flag and you get extreme fatigue. Having a different emotion every 5 seconds is tiring. Battling (& often failing) to contain the tears is wearing. Breathing & washing & conversing & not screaming is all taking gargantuan effort. The truth is I’m not managing very much. I’m practising being ok with that.

Blood transfusion, Rose wine, snuggling cat, reading baby

I recommend spending time with people who don’t expect too much of you. I’m giving priority to anything that give me comfort; my little people & potatoes pretty much have that covered. Hot baths have featured heavily as has ‘fake it ’til you make it’ make up. There was one afternoon of day drinking with a lovely friend that actually helped a lot, but not something it would be wise to make a habit of. My purring cat is a godsend. I’m reading, sleeping whenever I can and endeavouring to be gentle with myself.

ly h Kerr

I have no clue how to tackle the overwhelming sense of guilt. Chipping away at how ‘not fair’ this is may well take the rest of my life. I’m focusing on the small stuff. Giving myself a pass on the growing mountain of washing, the ideas that go unpitched and being awfully rude to the person who called about my non-existent road traffic accident. I find it harder than you’d imagine to let that stuff go. Being hard on myself comes easy. i have learned that when life gets you on the ground it’s worth tackling the instinct to kick oneself whilst already down.

Sunset

The Spoonie Guide to Xmas…

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a multitude of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a phone call for a meet up, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.